ResearchSpeak: the impact of pediatric MS

I can’t imagine what it must be like to a parent of a child with MS #ResearchSpeak #MSBlog #MSResearch

“I am sure parents of children with MS read this blog. This study on paediatric MS below highlights just how heavy the burden of MS is on the immature and developing brain and must scare the hell out of any parent.  A third of children had significant problem on a least one of the scales assessed with attention problems, somatisation, and anxiety being the most common. What to about this? I suspect the same principles apply to treating MS in children as they do to treating MS in adults; early effective treatment with a target. Maybe we need to be even more aggressive in paediatric MS? The developing brain seems like it is more susceptible to damage than the mature adult brain.”

“I have just written a commentary for one of the MS journals on flipping the pyramid and my personal reasons for doing it. What this means is simply starting with the highest efficacy treatments first-line. On reflection I should have included a section on paediatric MS. The problem with paediatric MS is that there is very little evidence to guide clinical practice. A very useful study would be to compare the flipping the pyramid strategy to the current standard of care and to see how they do in relation to cognitive and behavioural outcomes. One of the concerns in relation to flipping the pyramid in children is the concern people have about the potential impact of these treatments on the developing immune system; these concerns clearly need to be balanced against the risk of the disease to the child, in particular their brain development. I suspect most parent given the facts would prioritise the brain over the immune system.”

Charvet et al. Behavioral Symptoms in Pediatric Multiple Sclerosis: Relation to Fatigue and Cognitive Impairment. J Child Neurol. 2016 Mar 9. pii: 0883073816636227.

Background: The emotional and behavioral problems associated with pediatric multiple sclerosis remain unclear. 

Methods: Participants with pediatric multiple sclerosis or clinically isolated syndrome (n = 140; ages 5-18 years) completed self- and parent ratings using the Behavioral Assessment System for Children, Second Edition, neurologic exam, the Fatigue Severity Scale, and neuropsychological assessment. 

Results: Mean self- and parent-ratings on the Behavioral Assessment System for Children, Second Edition, were in the typical range across all scales. However, 33.1% indicated a clinically significant problem on a least 1 scale. Although the type of clinical problems varied across participants, attention problems, somatization, and anxiety were found to be most common. Disease features including duration, age of onset, neurologic disability, and fatigue did not distinguish those with and without clinical problems. However, cognitive functioning significantly predicted the presence of a clinical problem (P = .02). 

Conclusions: Pediatric multiple sclerosis is associated with a range of nonspecific emotional and behavioral clinical problems, occurring more frequently in those patients with cognitive involvement.

CoI: multiple

5 thoughts on “ResearchSpeak: the impact of pediatric MS”

  1. Well, I am one of those parents. Our child may have shown a couple of signs at 3. Definitely showed many new onset signs at 14, but other than Gastroenterologist, not one doctor thought MS or neurologic at all. In the meantime, she had more and more school issues that required more and more tweaking of her IEP (Individualized Education Program). Even when at 17-18 she was walking into walls, it took two extra months of arguing with the local neurologist that she could indeed have MS (I told him, he refuted. Neurologist trumps Paramedic almost every time, oh well).It took a change of medical team in another state to get a diagnosis. Weeks later, with this poor kid still in hospital and insurance refusing to approve DMDs, unable to keep up with schoolwork even with a teacher at bedside daily, her new docs at Mount Sinai started Rituxan, and to hell with the system. Thank G-d.But if over all those years, she would have been diagnosed and treated, how much more brain and cognitive function would have been preserved?

    1. She is an identical twin….so how not to watch her sister, wondering if she is in the 26% or 74% to get MS or another autoimmune disorder????

  2. Three people (possibly four) with MS in my family – all on my dad's side of the family including myself. My kids must be high risk and it is my worst fear for them to get it. I feel for you and your child, it must be hell. I give mine vitamin d just in case, but I doubt it would help really. They should MRI kid at high risk in my opinion. I am getting them a regular MRI as soon as they can sit still long enough in a MRI scanner. They have Aspergers, so they would find an MRI distressing.

  3. One child (now an adult) has confirmed MS. The other (also an adult now) has a range of issues, some of which come and go: anxiety, fatigue, sleep issues, learning issues, weakness, tremors, others. But a clear MRI. Doctors blame everything on the anxiety.

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